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FARAFARA Cure FA

Janesh Wadhwa

Name: Janesh Wadhwa

Age: 22

Where do you call home? Haryana, India

Education: I have completed high school and then furthered my education myself.

Employment: I stay at home and take care of myself and I also work as a volunteer at "Wings of Angelz,” that aims to make the world wheelchair friendly. Being a part of this organization gives me a proud sense of achievement of being the change I wish to see in the world.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was 9+ years old I used to walk weirdly and used to fall ill a lot, my parents thought it was related with my sister’s problem (she was living with FA at that time). So they took me to 1-2 neurologists, but they couldn’t diagnose me and ended up prescribing vitamins, but still things weren’t good with me. So my parents took me to another neurologist, he ordered a genetic test and after a few days I was officially diagnosed with FA. I was 10 at that time.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? Just my elder sister, she passed away in 2011.

Describe your transition from walking to walker/wheelchair. Prior to being diagnosed with FA, I was able to walk without any problem but after diagnosis, my ability to walk varied. Sometimes I could walk normally and other times I fell a lot. I tried a walker but it didn't work well for me, then eventually I had to move to a wheelchair. What do you like to do to stay active and what type of exercises do you do to stay strong? Though exercising is quite a task with FA, I believe that it is very important for person with FA, I do regular stretches to keep myself active. I also believe that the mind affects the body and hence always try to see the silver lining on the cloud.

What's your most comfortable pair of shoes to wear? I can't say which kind is most comfortable for me.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I believe we all are given challenges in some form or other, with or without FA. I am lucky to be born in the era of social networking sites where connecting with people is easier and I make most of this. FA has given me an opportunity to meet and support beautiful souls with the same condition.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? I would like to tell them to ‘keep walking’ – not literally but mentally. Acceptance of the changes that happen in the body is the first step. You will only be able to move ahead once you accept FA as a challenge in your life and not let FA define your life. What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? The first thing I want to do is what I’ve missed the most during living with FA and it is walking without any problem, so when the cure will be found for FA, I’ll start going for walks and enjoy what I missed the most.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? FA will only have me when I can let it take over my mind, which I won’t. Like Batman rightly said, “It is not who you are but what you do that defines you.” I don’t dwell on the fact that I have the disease and I actively work toward the betterment of other people with similar conditions.


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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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